DATA SHARING
Last Updated: Jun 10, 2016
- A federated ecosystem for sharing genomic, clinical data
Global Alliance for Genomics and Health, Science, June 8, 2016 - Sharing genomic, clinical data
EMBL-EBI, June 2016 - Global Alliance for Genomics & Health Argues for Federated Data Ecosystem
BioIT World, June 9, 2016 - PLOS Genetics Data Sharing Policy: In Pursuit of Functional Utility.
Barsh Gregory S et al. PLoS genetics 2015 Dec 11(12) e1005716 - U.S. project launched to promote data sharing by cancer researchers
Reuters, June 6, 2016 - Newly launched Genomic Data Commons to facilitate data and clinical information sharing
NCI, June 6, 2016 - Why an integrated network of genomic and clinical information on cancer is essential
Dog Lowy, NCI director, The Medium, June, 2016 - After a prominent gene-testing firm declined to give patients their complete data, ACLU filed a legal complaint
J Couzin-Frankel, Science Magazine, May 19, 2016 - Ethical considerations in biobanks: how a public health ethics perspective sheds new light on old controversies.
Virani Alice Hawkins et al. Journal of genetic counseling 2015 Jun 24(3) 428-32 - Patient and interest organizations' views on personalized medicine: a qualitative study.
Budin-Ljøsne Isabelle et al. BMC medical ethics 2016 17(1) 28 - Facilitating a culture of responsible and effective sharing of cancer genome data.
Siu Lillian L et al. Nature medicine 2016 May 22(5) 464-471 - Extracting Electronic Health Record Data in a Practice-Based Research Network: Processes to Support Translational Research across Diverse Practice Organizations.
Cole Allison M et al. EGEMS (Washington, DC) 4(2) 1206 - NCI's New Genomic Platform Seeks to Enable Data Sharing for Biden's Moonshot,
by Matthew Bin Han Ong, the Cancer Letter, April 29, 2016 - Federal Researchers Build Massive Online Database of Genomic Data
NextGov, April 2016 - Comprehension and Data-Sharing Behavior of Direct-To-Consumer Genetic Test Customers
SP McGrath, Public Health Genomics, April 2016 - A scoping study to explore the cost-effectiveness of next-generation sequencing compared with traditional genetic testing for the diagnosis of learning disabilities in children.
Beale Sophie et al. Health technology assessment (Winchester, England) 2015 Jun 19(46) 1-90 - Toward Global Biobank Integration by Implementation of the Minimum Information About BIobank Data Sharing (MIABIS 2.0 Core).
Merino-Martinez Roxana et al. Biopreservation and biobanking 2016 Mar - Comprehension and Data-Sharing Behavior of Direct-To-Consumer Genetic Test Customers.
McGrath Scott P et al. Public health genomics 2016 Mar - Genetic Test Firm to Put Customers’ Data in Public Domain
A Pollack, New York Times, March 8, 2016 - Genomic data sharing: How much oversight is necessary
N. Kovalevskaya,·DNA Digest, February 23, 2016 - An open access pilot freely sharing cancer genomic data from participants in Texas.
Becnel Lauren B et al. Scientific data 2016 3160010 - International Charter of principles for sharing bio-specimens and data.
Published on 2015 by - Benefits of sharing
Nature editorial, February 10, 2016 - Can Data Sharing Become the Path of Least Resistance?
PLOS Medicine editorial, January 26, 2016 - Open Access Could Transform Drug Discovery: A Case Study of JQ1.
Arshad Zeeshaan et al. Expert opinion on drug discovery 2016 Jan - Open innovation in early drug discovery: roadmaps and roadblocks.
Reichman Melvin et al. Drug discovery today 2015 Dec - Biobanking and Privacy Laws in Australia.
Chalmers Don et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2015 Dec 43(4) 703-13 - Balancing Benefits and Risks of Immortal Data: Participants' Views of Open Consent in the Personal Genome Project.
Zarate Oscar A et al. The Hastings Center report 2015 Dec - Biobanks, Data Sharing, and the Drive for a Global Privacy Governance Framework.
Dove Edward S et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2015 Dec (4) 675-89 - Controlled Access under Review: Improving the Governance of Genomic Data Access.
Shabani Mahsa et al. PLoS biology 2015 Dec (12) e1002339
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Relevant Resources
- Cancer Genomics and Epidemiology Navigator (CGEN)
- Genetics and Genomics Competencies Center (G2C2)
- NIH Genetic Testing Registry
- NIH MedGen Database
- Online Mendelian Inheritance in Man (OMIM)
- PharmGKB
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